Anne - Liver Transplant Needed
This is dedicated to all with PLD Polycystic Liver Disease.
A friend Anne, was in need of a small piece of liver; someone else’s liver. She is incredibly stoic, showing a smiling face, shielding her deep inner strength. Anne is a tiny soft-spoken Japanese-American lady with two children, a young boy 11 and a girl 15. Her small size makes her huge cystic liver appear larger than mine ever was. Anne traveled all the way to the Mayo Clinic in Rochester, Minnesota. She is not a candidate for a liver resection. The liver has 8 sections and two of her non-cystic portions are at a far distance from each other, on opposite ends. That was not what presented the greatest risk. Following such extensive liver surgery, her blood vessels would not remain open to feed and nourish her tiny liver remnant. She had made plans to talk with the transplant team to discuss her options. Anne lives in Hawaii. The entire time Anne awaits an available organ, she will have to live away far from home as Florida is many plane hours away.
We
with PLD polycystic liver disease remain very low on the organ
transplant list because they say our liver never fails. Anne has PKD
polycystic kidney disease and her kidney functioning is around
40%, this makes her not eligible for a double transplant. If any
have considered becoming altruistic donors, I would urge you to help
us now. We have nowhere else to turn but toward you. The
transplant centers will not give us any priority on organ waiting lists.
My
heart really goes out to individuals with liver cysts. I am one of
these individuals. I am a lucky one. For me the liver resection
worked well. It took a long time to recover, but I am healthy as can be.
Anne
used to surf the waves in Hawaii, but with severe cystic liver
disease, it is difficult to lie on a surfboard and paddle. Anne
tires very easily caused by anemia and carrying around a forty
pound cyst filled liver. She gets breathless quickly. The liver
presses against her diaphragm and causes her lungs to remain in a
partially collapsed state. She cannot take a full breath. She is
unable to eat much food. A cyst filled liver compresses her
stomach, creating early satiety, severe bloating, deep pains and
sometimes the food she eats, just pops out of her mouth from the
continuous stream of slowly increasing pressure against her
internal organs. We with PLD have become very creative in our attempts
to digest and obtain sustenance from the foods we eat. We try
different twisted postures to relieve the distension or sometimes
just doing a gentle backward bend similar to a limbo dance allows
room for a little added expansion for a food-filled-stomach. This
aids digestion and increases nourishment.
Here in Hawaii there is no
way they will even consider listing Anne for a transplant. In
Hawaii we have 30% more end stage kidney disease than any other
place in the nation. We probably have more liver disease as well. I spoke with Janine, who was also at the Mayo. She was discharged
from the hospital following her liver resection only after 6
days. She is a real ball of fire. She said to me she didn't feel like
a ball of fire and she was very very tired and sore. I am amazed
at how quickly Janine has recovered. She will remain in Rochester
for two additional weeks. These two ladies happened to be in the
same place at the same time with two different possibilities.
It
happened that last year, I was at the Mayo and met Meg in the
intensive care unit. It was Thanksgiving Day. She is a beautiful
courageous young woman in her early thirties who had just received
liver resection surgery.
There was another lady who also appeared on
the scene. She is a public health nurse and I spoke with her
prior to my liver resection fifteen years ago. She met Janine
in person. For this nurse it had been 20 years since her liver
resection and she is looking good, her liver cysts have not
re-grown. In the UK, another individual somehow managed to get a
liver transplant for cystic liver disease. She too is doing very well.
With
PLD polycystic liver disease they say our liver will rarely fail.
Mine did, a few others I know also experienced this. But this is
not what kills us. What kills us is the mass, this huge mass of
growing liver cysts that continually enlarge, fill with fluid,
expand increasing the liver size. This is in part why cystic livers
rarely fail. The liver is the one organ that will re-grow. It
regenerates itself. As the liver is expanding, it is replacing cystic portions with
normal liver tissue, the resulting mass is a huge heavy cyst
filled liver. We look as if we are in the tenth month of
pregnancy. Males with severe cystic liver disease take on a similar
appearance - small thin scrawny upper body and huge protruding
bellies. Cystic livers can reach 40 pounds and more of pure water filled
cysts, causing a normally smooth liver to become hardened,
resembling a rock that slowly moves forward filling the belly and by its
force crushes organs in its path, displacing ribs, spinal bones,
hip joints, stomach, intestines, blood vessels, blocking blood
flow, pushing everything out from within the inside of our now distorted
human body.
A few of us with severe polycystic liver disease have
experienced our tissues falling easily through any bodily orifice
pushed by the force of a growing living cystic liver mass. It
presses on, squeezing bones, blood vessels, nerves, and organs.
Some develop pudendal nerve entrapment, a very painful syndrome.
Others experience chronic pain. You never hear of these complaints, for
we are a very stoic group of individuals. We have continually been
told by health professionals that there is not much to do for
liver cysts, other than sit by and watch our livers grow.
I have
heard of one woman who was repeatedly told there was nothing to do
for her. One day her cystic filled liver pressed and pressed
against her ribcage until it broke a piece of her rib. The rib
fragment punctured her intestines and she died. Another friend could not
eat. The doctors gave him nourishment through a catheter. Eventually he
became weaker and weaker and died from malnutrition. Another
friend developed an infection within her liver cyst. The doctors
tried so very hard but infection within a liver cyst is almost
impossible to treat successfully. She too died.
Waiting
patiently for a liver transplant that does not seem to happen has
become the fate of a many of us who are not eligible for a liver
resection. It is a rare event for cystic livers to fail. This
makes transplant less and less an option for us with PLD
Polycystic Liver Disease. We need your help to move us up on the
organ transplant list.
I urge you to take a moment to strongly consider if you or if
a friend might be willing to give us a small portion of your
liver.
This is dedicated to Anne (died age 36) , Leo (died age
62), Vikentia (died age 57) and Brenda (died age 47) all who died
before they could receive a liver transplant or a liver resection for
severe PLD Polycystic Liver Disease. There are many more in this
dedication - more of us are desperate need of help from Severe
Polycystic Liver Disease. We have to first convince our families
that we need help. Next we must convince our doctors that we are
in need of help and now we must convince the organ donor teams
that individuals with a cystic liver sometimes need a new liver
not because the liver stops functioning but because of its shear
mass, weight and pressure that may eventually lead to our demise.
Thank you for reading this. Please consider helping us.
Death ends a life, not a relationship.
- author unknown -
